Monday, February 22, 2010

Letter From Lyme Dad

I got this letter from my good friend Jen.  A father speaks from his heart about the remorse he has for doubting his daughter's iillness.  But he studies and understands that she is really sick.  I have never doubted my wife's symptoms, but I did doubt her self diagnosis of Lyme.  I have some empathy for this guy.

Dear Family of a Lyme Disease patient,

I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.

I am one of you.

For more than 6 years my daughter has suffered through this ugly, dark disease.

She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).

She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting time of her life.

We have taken her to every known medical specialist in southern California as well as three different General Practioners.

She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).

For the first 4 years of her struggle, I was not a good parent, even though I thought I was.

My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".

I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me").

Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.

You can't possibly be this ill and not have something tangible to show for your symptoms.

You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.

Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.

That's the way I approached her illness. It's time you took control of your illness and will yourself well.

I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.

My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.

Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.

If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.

I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.

Hey they just can't help the way this disease treats them. It's not their fault.

We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.

They need our understanding.

If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.

Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.

We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.

My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.

She certainly doesn't need someone who claims to love her causing her any more pain than she has already.

Families. from one who has been in your shoes, please let them know you love them.

Let them know you're there to help them.

Let them know that there's no way you can possibly understand their pain, but that you wil try to understand their illness.

I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.

I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.

I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.




  1. GREAT letter i suffer chronic LYME disease many dont get it...
    now the fear is my daughter 16, has it is being seen by my LLMD!

  2. wow, thanks so much for posting this. Although no one in my family really disputes my lyme diagnosis (I have had it since birth- 26 years now), they simply don't act like it is serious or anything to be worried with.

    I have an Uncle with cancer, and while I think it is GREAT that he has a strong line of support, I have nothing. It seems like they believe his illness is more validated than they overlook and ignore me and my problems.

    If only I could get a phone call or email every now and again asking how I am doing...

    thanks again...I will be sharing this letter with the apathetic members of my family.

  3. So simply written, yet with a profound and clear message. Many men wouldn't have written such a thing!
    Thankfully this isn't reflective of my life with my parents or husband, but I do know that many, if not MOST individuals with chronic Lyme disease suffer the brunt of ignorant, confused family members...
    They are suffering too, just in a different way.
    Thank you so much for writing this, Lyme Dad.

    And it's true. So often through HISTORY in general, those who were inflicted by awful illness/disease didn't learn much compared with how much those around them learned and grew in character!
    I've seen hundreds of people be drastically and intricately changed THROUGH my being sick. Unfortunately, for us humans, it often does take circumstantial alterations for us to learn or change or see things differently. Thankfully the God who so loves us through Jesus Christ doesn't need situations to change in order to reveal Himself, but we are the ones who can sometimes require that.

    Praying with and for you all...
    So thankful you wrote and posted this.
    Thanks for sharing the way you did! I'm sure it will impact MANY lives...

    In His love and the freedom found there,
    Christa Vanderham
    (the Lamp POST blog)

  4. Hi Lyme Dad,
    May I link to your blog from mine?

    Pam Thomson

  5. I have had Chronic Lyme for 9 and a half years , and I'm writing this in defense of the people who don't understand . First of all we have a medical profession that doesn't recognize or expose Lyme for the debilitating disease it really is . And because of the fact that allot of us do look pretty healthy and our symptoms constantly change , looking at it from their point of view I can even see where they might be skeptical . It's hard to explain to your family why you can't go on the camping , hunting,or fishing trips , and why you don't seem very social at gatherings anymore , well for many of us it's because we are sensitive to light and noise , personally my Tinitus is so bad in both ears I may come off as crabby and short tempered , but it's really because of the anxiety that builds up from these conditions . To the people who don't understand , believe us , our conditions are real and we do need your support .
    Thanks if you took the time to read all this .